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See all MNHQ comments on this thread

Could we have a disability board?

191 replies

Hazelnut5 · 29/04/2021 19:08

I know there are loads of us on here with disabilities, but there’s currently nowhere obvious to post about it.

There are lots of threads scattered across the topics: issues like applying for PIP, grants, mobility scooters, working / parenting with a disability, where to buy incontinence pads, frustrations, etc etc. But without a clear place to post, the threads tend to get lost amongst all the other concerns. That also makes it very hard to build any kind of community among the disabled users.

There’s a special needs board but that seems to be used mainly for threads about autism and ADHD. It would never occur to me to look there for threads about disability.

Lots of people with disabilities really struggle in their lives and can feel very isolated when everyone else seems to be getting along fine in their able-bodied worlds. I think a disability board could really address our isolation and make a positive difference to our lives.

OP posts:
Hazelnut5 · 06/05/2021 11:35

Children with disabilities
Teens and young adults with disabilities
Adults with disabilities
Wheelchairs and mobility aids
Legal/financial (disability)
Carers

I like this list.

OP posts:
10brokengreenbottles · 06/05/2021 11:47

I like the latest list, but I would add in Chat because currently SN Chat threads get deleted after 90 days. Sometimes posters post there instead of e.g. SN Children because it gets deleted. It's also one of the 2 busiest boards currently.

Also possibly add in Education because things like the process of applying/appealing EHCPs cross over children and teens & young adults.

Samcro · 06/05/2021 11:54

i would hate to see the sn children's topic changed in any way. I haven't been on it in a long time. but it used to be very well used and a godsend for people with young children.

There just doesn't seem anywhere to talk when your child is an adult and no longer in education.
looking at residential options is so hard. seems sad that there is no where for that. or to talk once you have the option sorted, yet face the problems that having someone living in a care home produce.

5zeds · 06/05/2021 11:57

I would say EHCP process would come under legal but I think education is useful for problems at/with school and ideas for solving them.
Maybe 0-5s, 5-16s, and 16+ would be helpful????

5zeds · 06/05/2021 11:59

@Samcro we’re post 16 now and I feel the same.

RickiTarr · 06/05/2021 12:02

How about just reorganising the whole thing @DawnMumsnet ? ATM it all seems a bit scattered.

Have a disabled section, put “disabled parents” and “SN adults” & “autoimmune” or whatever already exists in it. Then maybe add “physical disability”, “chronic pain” & “disability cafe” (for chatting)?

That way it’s all under one umbrella and we all know which direction to limp in? Smile

Please 🙏🏻 and thank you 😊.

5zeds · 06/05/2021 12:02

I think the financial stuff highlighted by @NoHaudinMaWheest is really important. The fact UC is available for 16-18 year olds in education had never been mentioned to me by anyone!!!! If we get it he will have nearly double what he gets from PIP and that will mean more support/experience every week.

RickiTarr · 06/05/2021 12:05

@Hazelnut5

Children with disabilities Teens and young adults with disabilities Adults with disabilities Wheelchairs and mobility aids Legal/financial (disability) Carers

I like this list.

Sorry missed there was already a draft list. Blush
NoHaudinMaWheest · 06/05/2021 13:04

I agree that disability stuff all needs to be in one place and that it needs to be signposted as Disability so that everyone concerned knows it relates to them.

Personally I would like to lose 'SN' altogether but appreciate that some people may relate to that term more.
As an aside I think one reason why the wheelchair/mobility aids topic is so little used is because it is under 'SN'.

However there is a well established group of users of mainly the SN chat topic who mainly (though not exclusively) have children and young people with ASD. It seems a shame that they should lose that resource both as support for themselves and information for new posters in that situation. I don't think there is anywhere else on MN where they could post instead, which is why a think a specific ASD (or neurodiversity) topic would be good but under the umbrella of disability.
Then when posters on that topic need advice about general disability matters (legal, financial, educational) they can easily go to the general disability topics.

As a family we deal with ASD, mental health conditions, wheelchair use, other mobility problems, chronic pain, fatigue, visual impairment and other physical health issues. I would look for advice relating to any particular condition in a dedicated topic (if there is one) .
However a lot of what I need advice on is general disability stuff and I also just want to chat to people who 'get' disability whatever kind it is.

MoMuntervary · 06/05/2021 13:07

Yes please - I would definitely appreciate an inclusive, all-welcome disabilities board. I really don't think there's any need to divide it and chucking it all in together will keep the board active. Popular topics can have long running threads e.g. the chronic pain thread.

I know that there's an adults with SN board, bit would never post on it. The term comes from the special educational provision that schools should make for those who need it. If some neurodiverse adults find that term helpful and want to use it, that's great, but I think the majority of disabled people would not recognise it as applying to us whether we have visible or invisible disabilities.

10brokengreenbottles · 06/05/2021 13:27

5zeds EHCPs may be a legal document, but the majority of parents don't post in SN legal/financial and won't post in Legal (Disability) about EHCPs, especially parents new to EHCPs. They post in SN education, SN chat, SN children and SEN.

5zeds · 06/05/2021 13:51

It’s fairly course mmmm to be diagnosed later with invisible disabilities. Would others post on an asd specific (for example) board before dx?

NoHaudinMaWheest · 06/05/2021 14:34

5zeds possibly some wouldn't but quite a lot of people already post on the SN boards when ASD etc are first suspected.

Dizzywizz · 06/05/2021 14:51

Yes, another vote here for a disability board!

5zeds · 07/05/2021 07:57

Obviously I only know my own experience and those that I have spoken to over the years. As I’ve stated previously (and did when this was last discussed) I really do prefer disabled to SN.

I wouldn’t however have posted on an autism specific board when Ds was younger without feeling deeply uncomfortable and I would have struggled to “give advice” to those with a rubber stamped dx even though Ds is severely disabled for want of a better descriptor. I think my contribution to the boards was helpful to some and participation was definitely a big support for me.

ThisIsSimplyBeyond · 07/05/2021 09:30

@MoMuntervary

Yes please - I would definitely appreciate an inclusive, all-welcome disabilities board. I really don't think there's any need to divide it and chucking it all in together will keep the board active. Popular topics can have long running threads e.g. the chronic pain thread.

I know that there's an adults with SN board, bit would never post on it. The term comes from the special educational provision that schools should make for those who need it. If some neurodiverse adults find that term helpful and want to use it, that's great, but I think the majority of disabled people would not recognise it as applying to us whether we have visible or invisible disabilities.

Yeah that's why I wouldn't post in "SN" - I don't associate the term with myself (though would with my children) as my autism was diagnosed as an adult, and all of my physical problems came on as an adult too.
PaddingtonPaddington · 09/05/2021 12:13

I’d welcome a disability board. Would like to see a neurodiversity section.

Hazelnut5 · 09/05/2021 19:00

MNHQ Please could you give us some idea when you’ll be able to give us an answer? I think it’s pretty clear from this thread that there’s loads of support for a new board, although it’s obviously complicated by the issues with the special needs boards which lots of people have commented on.

Thanks.

OP posts:
YetAnotherBeckyMumsnet · 10/05/2021 17:51

@Hazelnut5 we're discussing this request - please bear with us. We're reading through all of the posts here and promise to update you as soon as we can. Please do continue with the suggestions and feedback as that's v useful for us. Thank you.

HeyDemonsItsYaGirl · 19/05/2021 02:31

Any movement on this?

My view is to have a single disability topic, not a disability area with a dozen sub topics. 90% of the topics on here are dead because there are so many of them; it dilutes the board terribly.

I would also leave the current SN topic. It seems a very helpful place for the parents of ND children and don't fix what ain't broken! I think most people have the same understanding, broadly, of the difference in the terms 'disabled' and 'special needs', and so most threads would end up in the right one.

baaaaal · 19/05/2021 06:32

My view is to have a single disability topic, not a disability area with a dozen sub topics. 90% of the topics on here are dead because there are so many of them; it dilutes the board terribly

Agree 100%. There is also the added hassle of having to check 3 or 4 or 5 different topics on a regular basis rather than just checking one topic and scrolling down through the posts.

One topic covering mumsnetters with disabilities.

I would also leave the current SN topic. It seems a very helpful place for the parents of ND children and don't fix what ain't broken!

This too. Re the earlier discussion I have ADHD and see it as a disability and not a special need, so would never have thought to post there.

There is also this stance on ND by arguably one of the biggest ADHD communities: We consider the neurodiversity paradigm to be harmful to people with ADHD, both directly in terms of its stated goals and indirectly via constant attempts to silence us for disagreeing with them.

And while I respect everyones right to completely disagree with that stance, I am more on the side of agreement.

A previous poster hinted at this earlier but it's why I get a bit... edgy when I see posts hinting that we could just bundle everyone into a "Neurodiverse Topic".

Like I have absolutely no idea why anyone would want me to celebrate the fact nobody can read my dyslexic DD10's writing as a "difference" and not see it for the deficit that it is? An impairment which has a substantial and long term negative effect on her ability to normal daily activities. Literally the definition of a disability.

She also has adhd and cannot dress herself without supervision amongst many other things, all of them impairments to her daily life.

But I feel like this movement can ultimately lead to what a pp brought up earlier, that wether it actually exists or not, it can feel like:

I think there’s some deep rooted othering of invisible disabilities on this thread. You can’t be disabled without having additional needs (special needs). A lot of this reads as though people are ashamed to share the “disabled” descriptor with people with neurological disabilities

And we end up in situations where disabled posters look at a board and see ASD and ADHD and think "nope, not for me".

When actually, if you click on my thread, you'll see I'm just having a vent because:

-This is the second night in a row I haven't slept a wink (though I slept 22 hours on Sunday)
-I haven't cooked since Saturday. Friday?
Amongst 100 other things I could post about that I won't bore you with right now.

Is the most important thing wether it's pills or pain causing the sleep? Physical or mental inability to prepare yourself a meal?

Or is the most important thing finding support from someone who understands what it feels like to constantly not sleep for two nights, or cook for four days? To reassure you about PIP and be someone who understands?

That's the main reason I would prefer one topic, personally.

BilindaB · 19/05/2021 06:39

Yes please!

ShinySquirrel · 24/05/2021 11:42

Just popping back to see if there's been any movement on this, and commenting to bump the thread. Smile

Merryweather80 · 24/05/2021 12:06

I think if it's going to be just one topic then each thread needs to be very clear what the issue relates to eg ’fibro pain’, ’PIP problems’, ’autism - child’ so people know which threads to read to post advice. For example, I have no helpful advice about autism, so wouldn't read a thread about autism.

Having topics would help with this but I can see how defining them could be an extremely difficult and sensitive task. I

ohsuzannah · 24/05/2021 14:14

Agree, I am both disabled and a cater, I would love to see a dedicated board.

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